Background: About 91000 people died in Sweden in 2016 and of those who died an estimate of 70000-75000 needed palliative care. When facing one’s own death it actualises questions about life and death and what happens thereafter. An important aspect of caring for patients at the end of life is the existential and spiritual dimension and therefore it is important that nurses have adequate knowledge and insight to be able to provide the best possible spiritual care for the patients. Aim: The aim of this study was to illustrate nurses’ different experiences of existential and spiritual encounters with patients at the end-of-life. Method: A method to contribute to evidence-based nursing with ground in analysis of qualitative research was used. An analysis of thirteen qualitative articles was carried out and resulted in 3 main themes and 12 subthemes. Results: The results of the study showed that some important factors with regards to existential encounters were courage, good communication skills, presence and the ability to care with love and compassion and to instill a sense of hope. For the nurses the encounters fostered a process of inner growth as they started to reflect on their own sense of spirituality and on issues of death and dying. Barriers included lack of time, knowledge and staff shortages. Conclusion: There is a need for sufficient time, education and support for the nurses to feel more prepared and comfortable in meeting the existential needs of the patients. Keywords: Palliative care, existential, spiritual, experience, nurse

Det blir allt vanligare med människor som vårdas palliativt i hemmet. I och med det blir det vanligare att närstående är en del av vårdprocessen. Närstående ställs då inför en helt ny roll gentemot den anhörige. De upplever svårigheter med att bibehålla ett normalt familjeliv då hemmet mer och mer börjar likna ett sjukhus, samtidigt som de vet att de inte skulle klara sig utan hjälpmedlen. Upplevelsen för närstående att ha en döende familjemedlem är påfrestande. Den närstående är inte längre bara en familjemedlem eller vän utan någon som den sjuke är beroende av. För att kunna axla denna roll behöver den närstående stöttning från sjuksköterskan, vänner och familj.   För att sjuksköterskan ska kunna ge det stöd närstående behöver är det viktigt att få en uppfattning om den närståendes upplevelse av den palliativa vården i hemmet. För att ta reda på detta valdes en litteraturstudie till examensarbetet. 12 kvalitativa artiklar analyserades till resultatet vilket mynnade ut i tre teman, att ta ansvar i vårdandet, att ha behov av stöd och att möta döden.  Resultatet visar att de närstående känner ett ansvar i vårdandet. Vissa uttrycker att de inte har något val, de sätter sig själva åt sidan för att kunna uppfylla löftet att vårda den sjuke. Andra känner att det är en självklarhet. De tycker att det är en naturlig del av livet och en möjlighet att få vara nära sin älskade på slutet. Det är viktigt med stöd från sjukvårdspersonal, vänner och familj för de närstående. Brist på stöd gör att närstående känner sig övergivna. Det är lätt att den närstående blir isolerad och bunden till hemmet under vårdtiden och för att klara av det krävs det stöd från utomstående. Närstående tycker att det var svårt att prata om döden, speciellt med den sjuke. De upplever att det är lättare att diskutera döden och sjukdomen med sjuksköterskan för att inte oroa den sjuke i onödan. De känner sig ständigt konfronterande med döden men de uppskattar att de kan vara närvarande och där för den sjuke på slutet. / Background: In recent years, it has become increasingly common for patients to choose to end their life at home. Relatives often wants to fulfill the wishes of the sick person, but are often poorly prepared to act as caregivers and experience lack of continuity, insufficient information and poor treatment. The experience of relatives having a dying family member is stressful. Aim: The aim of this study was to describe the experiences of relatives in palliative homecare.  Method: A literature based study with 12 qualitative articles were performed using the Friberg method of analysis. Results: The result showed that some relatives felt that taking care of their family member where a matter of course and others felt that they had no choice. It was important for the relatives to have support from healthcare professionals, family and friends. Lack of support made them feel abandoned. It was difficult to talk about death with the dying family member and relatives expressed that it was easier to talk to the nurse about it.  Conclusion: Death was constantly present, despite that death was hard to talk about with the sick person. It was also hard for the relative to be responsible for someone else and they felt that they were isolated in their own home. The relatives felt therefore the need to be supported by the nurse. They needed to be able to talk to the nurse and feel safe to fulfill the feeling of support.

Palliativvård innebär att ge en god vård till alla patienter oavsett sjukdom i livetsslut. Att lindra smärta med hjälp av omvårdnad är viktigt att eftersträva i denpalliativa vården och där har sjuksköterskan en viktig roll. Smärta i palliativvård är ett vanligt symtom som kan lindras genom omvårdnadshandlingar. Syftetvar att beskriva omvårdnad av patienter med smärta i palliativ vård. Eninnehållsanalys gjordes där två kvantitativa och sju kvalitativa vetenskapligaartiklar granskades. De nio vetenskapliga artiklar som granskades resulterade itre kategorier; Smärtbedömning, Komplementära behandlingsmetoder,Psykosocialt stöd. Resultatet i studien visar att omvårdnadshandlingar somkan lindra smärta är värme och kyla, distraktion, lägesändring, avslappning ochnärvaro. Psykosocialt stöd ges till både patient och anhöriga genom att geinformation och ha en bra kommunikation. Ett bra samarbete i teamet kringpatienten är viktigt för att främja smärtlindring. Bedömasmärta kan vara svårt på grund av att vissa kategorier av patienter inte kanförmedla verbalt att de upplever smärta. När närstående misstror sjuksköterskankan det också vara svårt att bedöma smärta. För att lindra smärta med hjälpa avomvårdnadshandlingar krävs kunskap, erfarenhet och god kommunikativ förmåga. Inomämnet finns det behov av fortsatta studier som exempelvis; hur användningen av smärtskattningsinstrumentoch dokumentation kan utökas i den palliativa vården. / The definition of palliative care is to provide a diligent care to all patients no matter what disease they suffer from in the end of life. To manage pain with nursing care in palliative care is important and the nurse has a significant role. Pain in palliative care is a symptom that often occurs and can be manage through nurse interventions. The aim is to describe nursing care of patients with pain in palliative care. A content analysis was made where nine scientific articles were audited. The nine scientific articles that were audited resulted in three categories; Pain assessment, Complementary treatment methods, Psychosocial support. The results of this study indicated that nurse interventions can relieve pain; heat and cold, distraction, change of position, relaxation and touch. Psychosocial support is given to both patients and relatives through information and communication. Teamwork in the palliative team is important to assess and manage pain in palliative care. Pain assessment can be hard because some patients cannot verbally tell that they suffer from pain. When family members were mistrustful of the care it was hard for the nurse to assess and manage pain. In order to relieve pain with the help of nursing documents, knowledge, experience and good communication skills are required. Within the subject there is a need for further studies such as; how the use of pain assessment instruments and documentation can be expanded in palliative care.

The World Health Organization and the leading hospice organizations have emphasized the inclusion of family caregivers of hospice patients with cancer into end-of-life care, as these two dyad members may spiritually and emotionally influence each other. Given that depression and spiritual needs, which are prominent in these pairs, may impair quality of life (QOL) of hospice dyads, examining mutuality within dyads is imperative to develop a more accurate model that includes family caregivers. Therefore, the purpose of the study was to elucidate the importance of mutual effects within hospice dyads by examining the contribution of depression and unmet spiritual needs on their personal and their counterparts’ QOL. Structural equation modeling was used to integrate the feature of actor and partner effects in the Actor-Partner Interdependence Model. After eliminating outliers, the final sample was comprised of 660 hospice dyads in which the majority of hospice patients were white (97%) and male (56.6%) with a mean age of 73 years. Most of the family caregivers were white (95.9%) and female (73.5%) with a mean age of 65 years. On average, hospice patients reported a depression score of 4.00 (SD = 1.53), and their family caregivers had a significantly lower mean depression score of 3.65 (SD = 1.48). With respect to their spiritual needs, 25.5% of hospice patients indicated going to religious services was an unmet need, and about 13% of family caregivers also reported that going to religious services was an unmet spiritual need, followed by being with friends, laughing, thinking happy thoughts, and being around children. The results of structural equation modeling revealed that depression and spiritual needs in cancer patients and family caregivers exhibited significant actor effects on the individual’s QOL after controlling for the partner effects. Among the spousal pairs, depression in family caregivers exhibited a positive partner effect on hospice patients’ functional well-being (β = .15, p < .05), implying that as depressive symptoms increase, hospice patients’ functional well-being increases. This study supported the need for considering both as one unit and the mutuality inherent in dyads. The findings of the study suggest the importance of consistent assessment in emotional and spiritual well-being for hospice patients as well as family caregivers, as their concerns may be transmitted to each other due to mutuality existing within the dyads.

Although the curative model of medical care is predominant it is necessary to consider the palliative strategies at the end-of-life. The inter-relation of dying children, their families and pediatric palliative care teams are seldom analyzed outside Palliative Care. However, it is important to ethnographically think about the disturbing experiences of body and subject disintegration while people are directly experiencing them, even when the person is a child or a newborn baby. A central topic in this study is how personhood, body formation and disintegration, and childhood can be understood within the context of unevenly constructed and shared palliative communication with and without words. Hence, I analyze in this study how a Palliative Care Team in the city of Buenos Aires provides care, communicates, and ultimately produces a particular companionship to dying children and their families. This work is built on qualitative information gathered and produced during my four-month fieldwork with the Palliative Care Team. The ethnographic techniques (participant observation, non-participant observation and open-ended semi-structured interviews) I conducted show that their strategies of care and communication have as the main goal the process of companionship at the end of children’s lives. It is necessary to understand how patients, parents, and other family members are situated in this field of tensions between restorative and palliative medicine, and brought into this culture of Palliative Care in a public children’s hospital. My research asks, in what ways are pediatric Palliative Care practices exclusive to the social and cultural contexts of Buenos Aires? This work has three main sections: 1. care, 2. communication, and 3. companionship. In section one I focus on the clinical and non-clinical aspects of care involving the professionals’ and volunteers’ practices of giving care. In section two I concentrate my attention on the verbal and non-verbal aspects of the Palliative Care Team communication with children and families. In section three I consider the professional production of ‘companionship’. In this thesis I will demonstrate the significance of this concept according to the Palliative Care Team members and how care and communication are the base for the ‘production of companionship.’ / Arts, Faculty of / Anthropology, Department of / Graduate

Community health care aides form the largest group of home health care providers in Canada. There is an increasing trend in Canada towards more home deaths. Home Care and the health care aides that provide this care are an integral component of this movement. An Interpretive Descriptive study was undertaken to identify community health care aides’ experiences of support as they provide end-of-life care to those dying at home. Three themes emerged from the data: 1) Striving to provide the best care, 2) Connections, and 3) Loss. Findings suggest that relationships form an important part of the health care aides' work and are intertwined throughout all the themes identified in this study. Health care aides in the community often feel undervalued and unsupported by the larger health care team. Comparatively little research has been undertaken to examine the unique experiences of the community health care aides providing end-of life care, compared to research on the health care aides providing end-of-life care in the long-term care setting and to research on nurses providing end-of-life care in the community. Community health care aides have unique challenges and characteristics and this study was undertaken to address this gap. / Graduate

京都大学 / 新制・課程博士 / 博士(医学) / 甲第23465号 / 医博第4772号 / 新制||医||1053(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 近藤 尚己, 教授 山本 洋介, 教授 松村 由美 / 学位規則第4条第1項該当 / Doctor of Medical Science / Kyoto University / DFAM

Introduction: Palliative care is the approach to the care of patients with life-threatening illnesses. An important part of this is the rational use of a pharmacological approach to relieve suffering by addressing the symptom burden of the patient. Palliative care symptoms contribute a great deal to the suffering of the patient and affects quality of life. Different studies across several countries on the palliative care symptoms have identified common symptoms with pain being the most frequent. The WHO Public Health Strategy for palliative care outlines four components: policy, education, implementation and drug availability. These components interlink and each one affects the others. The drugs used for palliative care symptoms should be classified as essential medicines and be available to all patients who need this treatment. Factors influencing the effective pharmacological management of palliative care symptoms include drug availability, policy and the approach of the prescribers. Studies have shown that developing countries rank low in the use of the essential palliative care drugs especially morphine. Aim: The aim of this study was to describe the prevalence of palliative care symptoms and the prescribing and administration patterns in oncology and haematology patients at PGH, as well as exploring the health workers' opinions on the pharmacological approach to these symptoms. Methods: A mixed method approach was used to qualitatively look at the health workers' responses using inductive thematic analysis and quantitatively obtain information on palliative care symptom management from the health workers and patient records. Results: Pain was the commonest palliative care symptom identified by health workers, and evident in the patient records. A list of other palliative care symptoms, and the frequency at which they occurred was compiled in this study. The health workers highlighted drug availability, palliative care education and need to engage some nurses in prescribing some of the palliative care drugs. Fewer than half of the patient records assessed as being in need of palliative care (N = 247) were given medications from the recognized palliative care drug list (N = 101). Conclusion: This study showed that essential medicines for palliative care symptoms are not easily available in Zimbabwe for various reasons that include cost, policy, education and training. Pain and other palliative care symptoms are not adequately managed. Therefore, palliative care is not yet integrated into the health care system in Zimbabwe as mandated by the WHO. Recommendations to improve palliative care symptom treatment are suggested.

This qualitative research study explored the function of music therapy in the transformation of role identities for clients who had been in paediatric palliative care for an extended period of time. This study aimed to explore the value of music therapy in this transformation, as well as within the context of paediatric palliative care in South Africa. The research took place at a paediatric oncology unit at a local Cape Town Hospital where three participants were selected to receive music therapy sessions over a period of eight weeks. The session notes were analysed and six video excerpts were selected. Through the use of thematic analysis and coding hierarchies four themes (or “role palettes”) emerged from the data: the sick role palette, the mastery role palette, the resilient role palette and the theme of mutuality. It appeared that music therapy could have been a facilitator in the process of a shifting in role palettes. / Dissertation (MMus)--University of Pretoria, 2017. / Music / MMus / Unrestricted

Master of Public Health - MPH / In 2018 within the Kingdom of Eswatini, there were an estimated 1 074 new cancer cases and 660 cancer-related deaths. For some time, there has been a growing trend away from the provision of palliative care within an institutional setting to providing palliative care to the patient within the context of their own home. As a result, the majority of dying patients spend their final days at home with much of the care being provided by family caregivers. In Eswatini, little is known about the impact that managing a terminally ill patient has on the family caregiver and whether they experience receiving sufficient support from the local health services. This study aimed to explore the needs and challenges of family caregivers in providing palliative care for their relatives living with cancer in Hhohho Region, Kingdom of Eswatini.